Adult PCD Clinical Cases

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What is this session about?

During this interactive session, you will hear several interesting adult PCD clinical cases presented by early career researchers. For each case speakers will provide details on the patient’s present history, past history, diagnostic testing, and more exciting facts leading to final diagnostic outcome. Throughout there will be opportunities to raise questions, make comments and discuss.

About the Expert Moderator:

Natalie Lorent works as a consultant in Respiratory Medicine/Clinical Infectiology at the University Hospitals Leuven where she coordinates the care for adults with bronchiectasis and primary ciliary dyskinesia. She is also heavily involved in CF care and has a special interest in mycobacterial infections. She is an active member of the BEAT-PCD network and the focal point for ERN-LUNG for bronchiectasis and PCD at UZ Leuven.

The European Lung Foundation (ELF) Bronchiectasis Patient Conference will return on 23 March 2024, following the success of last year's event. 

This free online event will be beneficial for professionals to attend and is open to anyone interested in learning more about bronchiectasis. It will provide insight into the latest clinical findings, treatment and research, alongside real-life patient stories, plus resources and information to help patients live their life well.  

The conference has been developed with and supported by EMBARC, a pan-European network and the ELF Bronchiectasis Patient Advisory Group. A live transcription service will allow participants to generate captions in more than 50 languages.

Please promote this event to your network and to friends, relatives, family doctors, clinicians and anyone you feel would be interested in finding out more about bronchiectasis.

click here to register

ERS Webinar: Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: a European Respiratory Society technical standard

Find out more and register

11 March, 2024 - Online - 17:00–18:00 CET

Chair: Dr Myrofora Goutaki (Bern, Switzerland)
Speakers: Dr Nicole Beydon (Paris, France), Prof. Dr Jane Lucas (Southampton, United Kingdom)

Fees: Free for ERS members / €10 for non-members
Find out more about becoming a member

Educational aims

In this session, we will present the ERS Technical Standard of the measurement of nNO in children. The session will provide all the necessary information for people wishing to develop the measurement of nNO in children suspected of PCD. It will also give tools on how to express and interpret results.

Topics

• Describe the different techniques and methods used to measure nNO in children, their advantages and disadvantages.

• Explain the effect of the environment on nNO measurement and how to deal with it.

• Propose a standard report and explain how to interpret the results.

Target audience:

• Clinicians

• Laboratory technicians

• Nurses performing the test

• Respiratory scientists

Format

This webinar will include 45-minute of lectures, followed by a final round table discussion for 15 minutes.

Learning outcomes

After following this webinar, participants should be able to:

• Set-up the measurement of nNO in their centre

• Perform nNO measurement in children from the age of one year

• Report and interpret the results

Join us for the next IPCDPN webinar to find out more about current research projects happening in the world of PCD!

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13.00 - Introduction

13.05 - 'The latest in exercise research for people with PCD'

Anne Marie Lee, Associate Professor at Monash University, in Melbourne, Victoria (Australia)

13.35 - 'Assessing the effects of personalised airway clearance techniques in children with PCD'

Lynne Schofield, Paediatric PCD Physio and Clinical Doctoral Research Fellow. Leeds Teaching Hospitals and University of Sheffield (UK).

14.05 - 'Spring-cleaning the PCD airway: presentation of CLEAN-PCD results and discussion of geographical differences in standards of ACT'

Dr. Felix C. Ringshausen, Senior Physician, Hannover Medical School (Germany)

14.30 - 'Status of PCD physiotherapy in the USA'

Michael Davis, Associate Professor of Pediatrics, Riley Hospital for Children at Indiana School of Medicine (USA)

14.55 - Close

Paediatric PCD Clinical Cases (17:30 CET)

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What is this session about?

During this interactive session, you will hear several interesting paediatric PCD clinical cases presented by early career researchers. For each case speakers will provide details on the patient’s present history, past history, diagnostic testing, any other relevant information and final diagnostic outcome. Throughout there will be opportunities to raise questions, make comments and discuss.

About the Expert Moderator:

The session will be moderated by Dr Guillaume Thouvenin, a Paediatric Pulmonologist involved in PCD diagnostics and treatment for more than 10 years. He coordinates the CF and Rare Lung disease Center at Armand Trousseau University Hospital in Paris. He leads the French PCD workpackage group with Prof Bernard Maitre. He is also an active management member of the international BEAT-PCD network.

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In this course, the attendees will learn what patient and public involvement in research is and the evidence which shows that it is effective. The course will help to understand how patient and public involvement differs from research participation, explore different ways in which patients can provide input, its best practices, and challenges.

Topics

The course will focus on the development of following questions:

1. What is patient involvement and what value can it bring?

2. How can patients be involved in research projects?

3. Exploring PPI in practice: case studies from EMBARC and BEAT-PCD

4. Understanding best practices in PPI, in order to ensure a good experience for those involved

5. Where to start? Practical tips for starting to involve patients and the public in research

Format

• Lectures

• Q&A discussions

Please note that all timings are in Central European Time (CET).

Recording of the session will be made available to registered participants after the event.

Target audience

• Early career members

• Clinicians

• Post-graduated students

• Other health-related professionals

Accreditation

An application will be submitted to the European Board for Accreditation in Pneumology (EBAP) for CME accreditation of this event. The number of credits that you will receive will correspond to the time you spend viewing the sessions live.

Fertility and PCD

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What is this talk about?

We know little about fertility among people with primary ciliary dyskinesia (PCD). Prof Dr Sophie Christin-Maitre and Ms Leonie Schreck will give an overview of global infertility, its different causes and potential treatments, including the use and value of artificial reproductive technology for people with PCD and they will summarize current epidemiological evidence on the prevalence of infertility and ectopic pregnancies among people with PCD.

About the speakers:

Leonie Schreck is a medical doctor and PhD student at the University of Bern. She studies different topics important to people with PCD such as fertility, using questionnaire data directly collected from people with PCD. She manages the participatory study Living with PCD (formerly COVID-PCD) under the lead of Prof Claudia Kuehni. Living with PCD is an online study set up during the COVID-19 pandemic and enrols people with PCD from all over the world. The study team has recently sent out a fertility questionnaire to all participants and has collected information about fertility and fertility care from 384 people with PCD.

Sophie Christin-Maitre is MD, PhD, Professor of endocrinology in Sorbonne University, Paris, France. She is specialized in reproductive medicine. She is the head of the Endocrinology, Diabetes and Reproductive Medicine Unit in St Antoine hospital in Paris. She coordinates a center for patients with rare diseases, especially patients with primary ovarian insufficiency and Turner syndrome. She is vice-dean of student’s life in Sorbonne University.

After a successful first patient conference in 2022, the BEAT-PCD patient conference will take place again this year online on Tuesday November 21st at 14:00 CET, organised jointly by patients with PCD and their families, researchers and clinicians.

You can register for free here

We aim to provide up to date information on basics concepts about PCD, treatments and care in PCD as well as learning from others experiences of PCD.  This conference will also provide an opportunity to be updated on ongoing research, meet other people with PCD and contact local patient organisations.

All presentations will be held in English, however we aim to provide the slides at the beginning of the conference in English, German, French and Spanish, on our website. In addition, we will use an AI closed caption software that translates English in many languages, to support joiners from several countries. We will share instructions at the day of the conference. Please keep in mind that the software is imperfect and cannot always pick up words and phrases correctly. We cannot check and correct some of the translations, but we still hope it will allow more people to follow the talks and discussion.

The agenda can be downloaded here (English)

Agenda également disponible en Français ici

Das Programm gibt es hier auf Deutsch

Programa disponible aquí en español.

Genotype-phenotype associations in PCD

Wednesday, October 4th 2023, 17:00 CEST

Register HERE

What is this talk about?

For this complex topic, we will have two PCD experts sharing their knowledge with us: Hannah Mitchison focusing on genotypes and Myrona Goutaki on phenotypes.

About the speakers:

Hannah Mitchison is a Professor of Molecular Medicine at University College London, working to understand the genetic basis of PCD using human genetics, model systems and functional studies, with recent focus on developing genetic therapies. Hannah leads in the UK Cilia Network, 100,000 Genomics Project GeCIP Subdomains and is a founder of the EMBO ‘CILIA’ Conference series. She co-chairs the ClinGen Motile Ciliopathy Gene Curation Expert Panel, also BEAT-PCD WP2 which aims to develop CiliaVar, the first online PCD gene variant database. She works with patient groups, including as chair of Ciliopathy Alliance and on the PCD Research science board.

Myrona Goutaki is a senior clinical epidemiologist at the University of Bern, working to understand the clinical variability and disease course of PCD, using data from collaborative cohort studies. She leads the EPIC-PCD cohort that focuses on upper airway disease and its associations with lower respiratory disease in people with PCD and several other projects, which use qualitative and quantitative methodological approaches to explore important questions raised by people with PCD and the PCD scientific community. She is the co-chair of the BEAT-PCD clinical research collaboration and the chair of the paediatric respiratory epidemiology group of the European Respiratory Society.

Live Stream here: BEAT-PCD/ERN-LUNG Meeting & Training school 2023 (lena.events)

Audience: Researchers, Clinicians, Scientists, AHPs and early career members with an interest in diagnosis and management of the inherited motile ciliopathy Primary ciliary dyskinesia.

Meeting Objectives:

• Update members of the PCD community on the latest research and European initiatives

• Provide opportunity  to get involved in shared projects and goals and build on important international collaborations, crucial in rare disease research

• Involve and encourage early career members in PCD research

• Learn from people with PCD about research priorities: patients are central to our objectives

Download the program here

World Bronchiectasis Day is held annually on the first of July. Each year, organizers from around the world coordinate activities to increase awareness for bronchiectasis in hopes of identifying the many undiagnosed patients living with bronchiectasis. World Bronchiectasis Day is organized by an international planning committee co-chaired by Tim Aksamit, MD, Medical Director of Bronchiectasis and NTM 360 at the COPD Foundation, and Professor James Chalmers, MBChB, PhD, EMBARC Chair and British Lung Foundation Chair of Respiratory Research, University of Dundee. The global planning committee comprises patient advocates, representatives from collaborating global patient advocacy organizations and professional societies, and leading experts. Its aim is to raise global awareness, share knowledge, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide.

Register here

This event will take place on Friday 30 June at 15:00-16:00 British Summer Time.  In the run up to World Bronchiectasis Day (1 July), ELF want to raise awareness about bronchiectasis around the world.

You can submit your questions to a panel of bronchiectasis experts when you register for this free event.

The experts will answer as many of these questions as they can during the 1-hour webinar. 

The webinar will be recorded and made available on the ELF website after the event.

Register here

14:00 - Introduction

14:05 - Pelvic Health and respiratory conditions : Bridging the gap (Gerard Green, Specialist Pelvic Health Physiotherapist, Birmingham & London, UK)

15:00 - Can young people have symptoms too? An interactive discussion (Hannah Wilkins, Specialist Paediatric Physiotherapist, Southampton, UK)

15:55 - Close

What is this talk about?

Ear and sinus diseases in PCD are increasingly well-documented. However, recent reports have added knowledge of the specific features of ENT diseases in PCD. These data are useful for PCD diagnosis and need to be considered in PCD-specific management of patients.

About Prof Jean-François Papon:

Prof Papon has a PhD in respiratory physiology and is head of the ENT department in the academic hospital of Kremlin-Bicêtre, APHP, Paris-Saclay University. He is also the Vice-Chairman of the French Rhinologic Association and member of the scientific committee of the French PCD patient support group (ADCP). His department is a competence center for the diagnosis and treatment of PCD. Prof Papon has been working for 20 years on sinonasal diseases, he is a member of two research teams (INSERM- CNRS U955 and INSERM U933) working on respiratory biomechanics and genetics. Prof Papon is conducting multidisciplinary and international research on the clinical characterization of PCD disease and on genetics in PCD and chronic rhinosinusitis. He is also an active member of the international BEAT-PCD network.

Register here.

Join us for the next IPCDPN Webinar! We have speakers from across the world sharing their experiences of working with people with PCD.

Programme

13:00 - 13:10: Welcome and introduction

13:10 - 14:25: Exploring PCD practice around the world

Esta Tannenbaum - Australia

Sandra Gursli , Tonje Klatte & Frøydis Folkvord - Norway

Kirstin Unger - Scotland

Aslihan Cakmak & Mrs Kılıç - Turkey

Isobel Pogorelow Morales - Chile

Paolo Buonpensiero - Italy

Stevie Peake - England

Priscilla Kilts - USA

Katarina Hellberg & Anna-Lena Lagerkvist - Sweden

14:25 - 14:55: Questions and discussion

14:55 - 15:00: Closing statements

Register here.

Hosted by Antonio Moreno-Galdó at Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Hospital Universitari, Vall d'Hebron Barcelona Hospital Campus, 08035 Barcelona, Spain.

The training school targets early career members of BEAT-PCD and includes sessions on:

09:00 - 09:10 Welcome (Antonio Moreno, Amelia Shoemark & Heymut Omran)

09:10 - 10:10 PCD management

(Chairs: Felix Ringhausen + Sandra Rovira)

Management of bronchiectasis in adults with PCD (Eva Polverino)

LCI in PCD (Jobst Röhmel)

Submitted difficult management cases - Discussion

10:10 - 10:30 Coffee break

10:30 - 11:30 PCD diagnostic testing

(Chairs: Jane Lucas + Nisreen Rumman)

Immunofluorescence for PCD training (Noelia Baz Redon & Heymut Omran)

Genetic testing for PCD training (Núria Camats & Hannah Mitchison)

Submitted difficult diagnosis cases - Discussion

11:30 - 12:00 Research update

(Chair: Phil Robinson)

Whats new in PCD? Research update since we last met (Claire Hogg)

A PDF version of the schedule is available here.

You can sign up here: PCD annual training school (in person event) Tickets, Sat 3 Sep 2022 at 09:00 | Eventbrite

Please join us for the 4th International PCD Physiotherapy Network webinar - the second part of our adherence series. The webinar will take place via ZOOM on Thursday 28 April 2022 14:00 - 16:00 CET

Programme (titles TBC)

14:00 - Introduction

14:05 - Tom Meredith & Liz Shephard, Specialist PCD Physiotherapists, UK

14:45 - Professor Alexandra Quittner, Behavioural Health Systems Research

15:25 - Break out rooms: adherence to physiotherapy treatments in PCD, paediatrics and adults.

15:55 - Close

Additional information and registration is available here.

We would like to invite all patients representatives and people with PCD to the next online meeting of WP3 of the BEAT-PCD clinical research collaboration on Friday March 18th at 17:00-18:00 CET.

At the last meeting, we discussed unmet needs and areas that could benefit from our support. We jointly identified that a European patient congress could be helpful to improve communication among support groups with representatives of patient engagement groups and patients. We would like this to be an (online or hybrid) congress co-organised by BEAT-PCD and PCD support groups.

Therefore, we would like at this next meeting to discuss more in detail how to proceed and how you can be involved in the planning of European PCD patient congress.

We would be glad if you joined the meeting using the following link:

https://unibe-ch.zoom.us/j/63917233917?pwd=cldJRS8yMTd0c2FtdWJLbmYvUnZBQT09   

Meeting ID: 639 1723 3917

Passcode: 337714

For more information contact:

Myrona Goutaki myrofora.goutaki@ispm.unibe.ch and Jobst Rohmel jobst.roehmel@charite.de

What is this talk about?

NOUS, is the on-site deep-learning system that is being trained to detect the difference between healthy and abnormal cilia in cases suspected of PCD using electron microscopy (EM) images. Different teaching approaches are being tested that include (i) Detection of cilia that are usable for diagnosis (ii) Classification of normal and abnormal cilia, (iii) second classification of abnormal cilia in classes of abnormalities. Over 20,000 EM images of cilia have been input to NOUS and it is showing consistently improved accuracy as the training datasets enlarge. When testing it against diagnostic specialists (n=5) using blinded image datasets, an agreement of >75% in the classification of images was found. This is similar to the agreement measured between individual diagnostic specialists. Furthermore, it is currently being trialled alongside the current diagnostic protocol in order to validate the system for clinical use.

About Dr Andreia Pinto:

She started as a biomedical scientist in histocellular pathology but early refined her area of interest in EM. Dr Pinto worked for more than ten years in Lisbon, solo managing an electron microscopy department, taking in fundamental to translational research. Since 2014, she has been working on PCD, in 2019 she joined the Royal Brompton as a thoracic research associate. Dr Pinto is currently teaching a deep machine learning platform to recognize patterns in EM images of cilia with the aim to roll it out as a tool (PCD-AID) in diagnosis. She has also been involved in investigating new insights of Sars-CoV2 infection of the respiratory airway.

Registration:

Click here.

The meeting link will be sent out 24 hours before the event!